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Latest News about Patient Registries
Recent news which mentions Patient Registries
Timothy Syndrome Alliance & Pulse Infoframe collaborate on registry for rare CACNA1C-related disorders
March 24, 2022
Tickers
RWD
RWE
Tags
Cancer
Real World Evidence
rare disease platform
From
PRUnderground
The Myrovlytis Trust Leverages Pulse Infoframe’s Platform to Study Birt-Hogg-Dubé Syndrome
February 17, 2022
Tickers
PRO
RWD
RWE
Tags
validated instruments
Pharmaceutical
QOL
From
PRUnderground
Ensuring No Duplicates: Implementing Pulse Infoframe’s GUID Model to Transfer and Link Patient Data from Study to Registry for Rare Disease
November 23, 2021
Tickers
RWD
RWE
Tags
CDKL5
international study
Global Unique Identifier
From
PRUnderground
Alport Syndrome Foundation Joins Pulse Infoframe’s healthie™ Kidney Disease Patient Registry
September 14, 2021
Tickers
RWD
RWE
Tags
chronic kidney disease
rare kidney disease
Pharmaceutical
From
PRUnderground
PIP-UK to Celebrate Poland Syndrome Community Register Project at Annual Family Conference
August 12, 2021
Tickers
RWD
RWE
Tags
Basket Trials
patient/generated health data
Poland Syndrome
From
PRUnderground
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